Saturday, December 29, 2012

Moments I Don't Want to Forget #1

Sis and I went to visit Dad today. We are never sure from day to day if he is going to recognize us as his daughters, or merely as people that are familiar to him, so we always take it slow in the beginning. I put my hand on his shoulder and said, "Hi, Dad, it's Cindy and Susie. How are you today?" He looked me right in the eye and said, "Now that you're here, I'm A-Number 1."

It's the little things . . . always the little things . . . that keep you going.

Monday, December 17, 2012

Introspection: Finding Strength

As we get deeper into the progression of Dad's illness, and more and more of him slips away, I find myself judging people more harshly than I used to. I don't know if this is normal, part of some anger stage of grief, perhaps, but I find it disconcerting...and liberating.

Having grown up a hopeless people pleaser (the result of my upbringing, long story), I used to take a lot of crap from people. It was my nature to make excuses for those who disappointed me, or hurt me, or to blame myself for their bad behavior.  Through a lot of introspection and self-love over the years, though, I have managed to curb this tendency, and I have learned to stand up for myself when I need to. My mantra these last few years has been, "Speak your truth, even if your voice shakes." (Thank you, Brene Brown!)

Dad's Alzheimer's (and before that, Mom's vascular dementia) has certainly put me to the test. If I had known years ago the amount of "standing up" I'd have to do on behalf of my aging parents, I probably would have fainted on the spot.  But each time you do it, it gets easier. And when you are fighting on behalf of a loved one, you find strength you never knew you had.

I also find, though, that I have a low tolerance now for people who aren't genuine, who don't deliver, who "talk the talk" but definitely don't "walk the walk." I have learned to judge people by their actions, not their words, for words are often empty and spoken without much thought. Many people will say, "I wish there were something I could do." Very few will actually show up on the doorstep to do it.

I still let my guard down and get hurt, sometimes even by well-intentioned people.  But I've learned to shrug it off, mostly. It may take a few hours, or even a few days, lol, but I can work through it. Because there are more important things in life to spend my time on.

Like my father, who is dying from Alzheimer's.

Sunday, December 9, 2012

The Older I Get


Sis, Dad, me
This video breaks my heart.

When you're dealing with an Alzheimer's patient you never know when they are going to connect, when the brain will  function "normally", or when they are going to be on disconnect, with even everyday things causing them confusion.

We attended the Memory Care Christmas Party at Dad's residence Friday night. There was an entertainer there doing holiday music. For the most part, Dad ignored it. The hall was loud, the music was loud, and he was a bit out of sorts anyway. But when the entertainer started singing Silent Night, Sis and I looked over and there was Dad very quietly singing along. I only caught the last part of it on video, but it brought tears to my eyes. So sweet. But then, if you watch the video, you will see when the entertainer switches songs, Dad shuts down again. He looks as though he's trying to remember the words to the new song (Jingle Bells), but can't.

The night was a fun one, nonetheless, and there were times when Dad was in good form with his jokes. (I do thank God for his humor. It gets us through so much that could otherwise be devastating.) At one point, Dad leaned over to me and whispered, "The older I get, the more cynical I get." I stared at him in astonishment, as that was a lot more coherent than he'd been for most of the night. "That's true for a lot of people, Dad," I said, scrambling for some response to make. And then a moment later, he leaned in again. "You know what? The older I get...the older I get."

I kissed him.

That, dear Dad, is true for *all* of us. *grin*

Sunday, November 25, 2012

Bittersweet Holidays

Dad, with his nephew, Gary.

Brighten up a senior's holidays by visiting them this holiday season. It will be a precious gift.

"The holidays are bittersweet when a family is struck by Alzheimer's disease. It's a time for caring and sharing and reflecting on the year that's past and the year to come – and with Alzheimer's, the future is tough to face. But there are some bright spots.

People with Alzheimer's, more than anyone else know how to live in the moment. For just an hour, an afternoon or day, joining with your loved one in that moment can make for a very special holiday."

Excerpted from "The Gifts of Giving", Dementia and Alzheimer's Weekly
Full article here: http://www.alzheimersweekly.com/2012/11/the-gifts-of-giving.html

Tuesday, November 20, 2012

Get over it!


I hung the Christmas wreath on the front door tonight and was about to post a "Let the holidays begin" remark on Facebook, but then I stopped myself. It sounded too...flip? cavalier? And that's the last feeling I'm having about the holidays this year.

This will be the first major holiday that we won't be able to bring Dad home from his residential care facility to be with family. He just isn't up to negotiating stairs and strange rooms and commotion and big meals. And although I know it's the right decision, I feel incredibly guilty about it.

We'll visit him, of course. It just won't be in the traditional manner. But we'll make it the best that we can. For him. And for us.

Thinking about this makes me also think about all the residents I know at Dad's facility who have no one to visit them on the holidays, or any day. Oh, they have family, many of them do, anyway. The family just doesn't visit.

I understand how hard it is. I understand that it's heartbreaking to only see the shell of someone you love. I understand that it's even harder to see them decline with each visit. I understand that it's hard to leave your merry-making on a holiday and go to a place that's not so merry and bright.

But you know what? Get over it.

You think it's hard for you? Think about your loved one. Put yourself in their wheelchair. Wouldn't you want to know (and I think deep down, they do) that someone cares enough to take time out of their day to visit you? To wish you well? To hold  your hand or hug you with joyful holiday wishes?

Get over yourself. You want true holiday spirit? Go visit someone in an assisted living or nursing home for the holidays. Even if it's depressing. 'Cause you know what? That's got the true meaning of Christmas written all over it: Love.

Show a little to the forgotten ones this holiday season. You will feel blessed.

I promise.

Sunday, November 18, 2012

Remember


“Think how you love me," she whispered. "I don't ask you to love me always like this, but I ask you to remember."

"You'll always be like this to me."

"Oh no; but promise me you'll remember." Her tears were falling. "I'll be different, but somewhere lost inside me there'll always be the person I am tonight.”


― F. Scott FitzgeraldTender is the Night

Love and Laughter


Every day with Alzheimer's has its ups and downs, and this is Dad on a really good day.

He still has his mischievous smile that lets us know he's about to say something to make us laugh. I'm so thankful that he still retains his sense of humor, even if it is in a limited capacity. The fact that we can be silly together, and laugh, and tease each other, makes the days easier to bear. I don't know how families handle it when the disease turns their loved ones into nasty, angry, spiteful people...and it does happen. Often. What a great burden that must add to their already heavy load.

Dad has a habit of cracking everybody up in Memory Care. He once told an aide, "I can't even remember my own name. How am I supposed to get a date?"

Sometimes he cracks himself up so much that he can't stop laughing, which of course makes us laugh all the more.

I know someday I will look back and really cherish these good days. And I will remember that even in the midst of this horrible disease, we found things to laugh about.

I call that a win.

Sunday, November 11, 2012

Friday, November 9, 2012

Pizza, but no party :(


Not a good day at Dad's today, despite the fact that it was pizza day and Dad was in a good mood. Sis and I arrived bearing four large pizzas for the residents in Memory Care (MC) only to find the dining room torn apart for floor cleaning: the chairs pulled out of the room, the vacuum running, a mop and pail standing nearby. Um, pizza party, guys. Remember? The second Friday of every month? Always at three p.m.?

The MC supervisor was off today so there were only two aides on the floor. This is never a good thing when you have sixteen residents in the unit. Many of these residents need two people to assist them when they go to the bathroom, which means the other fifteen residents are left on their own for long periods of time. Today was no different.

Sis and I watched (and assisted) one very frail woman who was repeatedly trying to get out of her wheelchair. If she had succeeded, she would have been badly hurt as she cannot stand on her own. If we hadn't been there to help her, what might have happened? Dad also tried to get up and walk on his own because he needed to use the restroom, but we were able to keep him in his chair until we got help. All told, there was probably a good hour there where no one was available to check on the residents in the dining room.

These things happen a lot and yet management will tell you that there is no need for another aide on the floor in the MC unit. They are meeting the requirements set forth by the state and that is sufficient to them.

It's not sufficient to us, nor to the other family members we talk to. But how do you make a corporation -- or for that matter, the state -- listen?

Yep, a frustrating day all around. One of many.

Monday, November 5, 2012

National Alzheimer's Disease Awareness Month

November is National Alzheimer's Disease Awareness Month and National Family Caregivers Month. In the United States alone, there are nearly 15 million Alzheimer's and dementia caregivers.
Source: http://www.alz.org/care/honor-caregiver.asp

God bless the caregivers and those they care for. It's a long, hard road.

Thursday, November 1, 2012

Just do it!

This is something I've been thinking about a lot lately. Because of Dad's illness, my sister and I have gotten to know a lot of people in our position (taking care of an elderly parent), as well as a lot of people who themselves are struggling with disease and/or dementia. I think this speaks for a lot of them, and it comes from a place of love, but also frustration.


Note to families and friends:

We (the patients and caregivers) hear it all the time; that well-meaning, but vastly over-rated, sentence: "If you need anything, call me." Or, it's close counterpart: "If I can do anything, call me."

Well, you know what? If you want to do something for a burdened friend or loved one, just do it. Don't put the onus on them to ask. They are burdened enough. And there is a matter of pride involved. Nobody likes to ask for help. Don't put them in the position of having to do so. Seriously.

If you want to help, show up on their doorstep and announce you are going to make dinner. Better yet, stop by with a couple of casseroles and drop them off. Spend an hour at their house doing a couple loads of laundry. Call when you are on the way to the grocery store and see what they need. Send flowers to brighten up the patient's room. Run the vacuum and do a little dusting for them. Bake a cake.

If you want to do something, do it. For those who are in the trenches, words without action are pretty meaningless. And it is hard, so very hard, to ask for help.

Everyone wants to feel strong and self-sufficient. Help your loved ones keep their pride.

Just do it. (You'll be glad you did!)

Thursday, October 11, 2012

That's Amore

Pizza Party in Memory Care tomorrow, always fun. Dad still enjoys his food, thank God, and this is something Sis and I do once a month for the residents. Plus, special guests tomorrow! Can't wait.

Wednesday, October 10, 2012

Cake and Ice Cream

The birthday boy had copious amounts of cake and ice cream and declared it all, "Quite tasty." We shared the goodies with the other residents and staff. I think Dad enjoyed his little party.

The bonus was that he was having a "good" day in terms of  his mental state, so we were able to call one of his brothers and his two sisters so they could talk. He connected well, surprising my sister and I, and it was wonderful to see. It wore him out, though. We left him as he was getting ready to lay down for a nap. Too much cake, too much ice cream, too much concentrating.

But I think he'd do it all over again without complaints!

Monday, October 8, 2012

Milestones


Tomorrow is my father's 80th birthday. Once that would have seemed like such an important milestone in his life, as it would be for most people.

Today, though, the milestones are different, thanks to Alzheimer's.

He smiled and laughed? So thankful.

He was able to eat on his own? Tremendous news.

He remembered our names? Such sweet, sweet joy.

These are the things that make us happy now, and we celebrate these milestones for the gifts that they are.

Happy birthday, Dad. We love you.

Saturday, October 6, 2012

The Long Goodbye


Alzheimer's disease, really any form of dementia, is scary stuff. I know this because I'm the offspring of a mother who suffered from vascular dementia for the last eight years of her life, and a father who suffers now from Alzheimer's. (Indeed, my father was diagnosed within six months of my Mom's passing. Just when we thought we'd have time to breath again, the universe said, nope, not happening.)

My sister and I are now twelve years into our rocky relationship with dementia. We didn't ask for this, our new roles as caregivers, watchdogs, warrior advocates, guardians. We didn't plan for this. No one ever does. And yet, here we are. Parenting our parent, one who has a debilitating disease that will eventually kill him after making him suffer. That's blunt, but that's the way it is.

They call Alzheimer's "The Long Goodbye" because unlike losing a loved one to, say, an accident or a sudden heart attack, with Alzheimer's you lose them bit by bit, memory by memory, every single day. There's no grieving, processing, and getting on with your life here. It's a daily struggle, coping, crying, getting kicked in the guts, and then summoning the courage to do it all over again the next day. Every day.

And, when one has to wonder if they will end up like their parent, a thought that never leaves your mind, not for one tiny second, then Alzheimer's is not just scary, it's downright terrifying.

How many times can one's heart break and then mend, time after time, so you can keep going? How many tears can one person shed in a lifetime? How many fears can one cope with before the mind screams "I can't take any more"?

I don't know....

But I'm learning.

Additional reading: The Long Goodbye - Features - Atlanta Magazine